Caregivers' lived experience in trying to read slight movements in a child with severe brain injury: A phenomenological study.

AIMS AND OBJECTIVES: To explore caregivers' lived experience of reading slight movements of a child with severe brain injury. BACKGROUND: Despite increased need, the development of individual care for children with severe brain injuries has been prevented by their severe physical state and the poor reproducibility of their movements. In addition to a lack of evidence on the motor characteristics of patients with severe brain injury with multiple disabilities, their own development contributes to increasing variability in their states. Thus, caregivers are compelled to rely on their experiences, which have not been academically explored. DESIGN: A qualitative study based on van Manen's method of hermeneutic phenomenology. METHODS: Data were obtained through twenty-one 3-hr observation sessions and five 15- to 45-min group interviews. We observed a child (called AK) with severe brain injury and his 61 caregivers, and conducted group interviews with 28 caregivers. We focused on caregivers' experiences of reading AK's slight movements. The data were interpreted based on van Manen's hermeneutic phenomenological approach. RESULTS: Four themes emerged as caregivers' experience in trying to read AK's slight movements. By considering "AK's physical state and his slight movements" and discovering "caregivers' 'sense of uncertainty' about AK's slight movements," caregivers could decipher "AK's multiple slight movements." "Sharing" was found as a necessary aspect of these other three themes of reading AK's slight movements. CONCLUSIONS: We presented caregivers' experiences as related to these four themes in their efforts to read the slight movements of AK. Due to AK's slight movements with poor reproducibility, "sharing" was necessary to read AK's slight movements, as it exposes caregivers' lived experience to the interpretation of multiple caregivers. RELEVANCE TO CLINICAL PRACTICE: These four themes may be useful for assessing, guiding and promoting caregivers' use of sharing when reading the slight movements of children with severe brain injury.

Evaluation of nursing interventions using minimally invasive assessments methods for patients in a persistent vegetative state.

AIM: This study aimed to evaluate the effects of nursing interventions using minimally invasive or non-invasive methods conducive to frequent use in order to assess patients in a persistent vegetative state (PVS). METHODS: We provided three nursing interventions-sitting the patient in an upright position, footbath care, and oral care-to PVS patients (n = 11) and elderly bedridden subjects with consciousness (n = 6) for 3 weeks in addition to ordinary nursing treatments. The Kohnan Score, plasma cortisol and adrenaline levels, General Well-Being Schedule score, and facial expression assessments were used as evaluation methods. RESULTS: The Kohnan Score of PVS patients declined significantly, indicating that the interventions increased patients' consciousness levels, but none of the other parameters showed significant change in either group. The change in Kohnan Score showed dependent trends for facial expression at baseline, cortisol change during the intervention, and the term of PVS. CONCLUSIONS: The data suggest three indices for predicting intervention efficacy in individuals and for assessing an intervention's contribution to quality of life improvement. Among the multiple evaluation methods, Konan Scores was the most effective. Ultimately, the three nursing interventions used in this study and Konan Score led to the optimization of nursing home care and rehabilitation for PVS patients.

Perception of social support among family caregivers of vegetative patients: A qualitative study.

A vegetative state (VS) is the probable result after brain damage. After VS patients are discharged from the hospital, the responsibility of caring of them is transferred to their families, which impacts a caregiver's physical and psychological health. Social support as a valuable resource reduces the negative effects of stressful events. This study aimed to explore the perception of social support among family caregivers of VS patients. This study is a part of a larger qualitative study which used the descriptive and qualitative method. Purposeful and theoretical sampling was done, and data was gathered through face-to-face, in-depth interviews. The four categories of "Family, a supporter in all aspects," "Beautiful emanation of the nurse's role," "Revitalization via empathy and companionship," and "Defects in support," were extracted. The primary concern of participants was receiving social support which can facilitate caregiving and coping with difficulties, but there are many shortcomings in supporting these caregivers.

How the burden of caring for a patient in a vegetative state changes in relation to different coping strategies.

OBJECTIVE: To differentiate the burden of caregivers of patients in a vegetative state (VS) on the basis of different coping strategies and prolonged grief. METHODS: An observational multi-centre study was conducted with 61 caregivers of VS patients hospitalized in specialized units in Italy. The Anxiety and Depression Short Scale, the Prolonged Grief 12 and Family Strain Questionnaire were used to measure caregivers' burden and the Coping Orientations to Problem Experiences to identify the coping strategies used by caregivers. A hierarchical cluster analysis was carried out to group the data and a comparison between clusters was conducted. RESULTS: Caregivers were grouped in two clusters defined by the major proximity among the cases of the same group and the major distance from the cases of the other group. The first group was characterized by lower levels of anxiety, depression, family strain and prolonged grief. This group mainly used coping strategies referring to three factors: Social Support, Positive Attitude and Problem Oriented. The second group showed higher levels of anxiety, depression, family strain and prolonged grief and used the Avoidance strategies more than the first group. CONCLUSIONS: The burden of providing care to a VS patient is mediated by a range of factors including the different coping strategies adopted by caregivers. Support for these caregivers should take this consideration into account and should be subsequently personalized.

Valuing dignity in patients in a vegetative state on an intensive rehabilitation ward: improvement project.

AIM: To identify the causes that could hinder the provision of dignified care to patients in a vegetative state. BACKGROUND: In Italy, the incidence and prevalence of people in a vegetative state are increasing. The team members have a clear understanding of the meaning of being mortal and the value of human dignity. METHODS: A descriptive study design was used in an intensive care ward in Northern Italy. An anonymous list with negative factors must be drawn up. RESULTS: Thirty-two team members participated in the study. A lack of time and specific knowledge regarding the care of patients in a vegetative state, involvement of the family and repetition in assistance delivery were the most frequent causes that hinder provision of care to patients in a vegetative state. DISCUSSION AND CONCLUSIONS: The provision of dignity for patients is not an issue related only to the staff in direct contact with patients/clients, but also concerns the entire health care facility (physical structure and organisation). IMPLICATIONS FOR NURSING MANAGEMENT: The nursing coordinator has an important role in the promotion of care based on the respect for the patient's dignity, in the active involvement of staff and in the delivery of quality services to users.

[Pain and coma]. / Douleur et coma.

Pain is a complex notion which caregivers must be able to decipher. Its aspects vary depending on the patient's condition. In cases of verbal communication disorders, the subjectivity of the caregiver is enlisted. How should pain be assessed in situations of coma and how should it be treated?

Burden of caregivers of patients in Vegetative state and minimally conscious state.

OBJECTIVES: To assess differences in the burden of caregivers of patients in Vegetative state (VS) and minimally conscious state (MCS). MATERIALS AND METHODS: The Family Strain Questionnaire, Coping Orientations to Problem Experiences, Caregiver Needs Assessment, Short Form-12, Beck Depression Inventory and State-Trait Anxiety Inventory were used. Differences in psychological condition between caregivers of VS and MCS patients, with different disease duration and hosting facility were assessed with Kruskall-Wallis test and factors associated with the overall levels of burden with UNIANOVA. RESULTS: In total, 487 participants were enrolled. Daily hours of care-giving is significantly associated with the overall level of burden perceived by caregivers (F = 4.099; P = 0.018). Strain, needs and frequency of use of coping strategies are substantially similar regardless of the patient's condition and distance from the acute event. Caregivers of post-acute patients reported low scores in mental health (median = 33.8; IQR = 23.1-47.6) and higher state of anxiety (median = 54; IQR = 45-62), whereas caregivers of long-term patients expressed more needs in social involvement (median = 19; IQR = 15-22). CONCLUSIONS: Burden and distress were high for all caregivers of VS and MCS patients. As care-giving is a long-term commitment process, support to the caregiver should be guaranteed throughout the duration of the relative's disease despite the patient's diagnosis or place where the patient is hosted.

Burden and needs of 487 caregivers of patients in vegetative state and in minimally conscious state: results from a national study.

OBJECTIVE: The aim of this study is to evaluate the burden of caregivers of patients with disorders of consciousness (DOCs), considering psychosocial difficulties, health condition and financial aspects. DESIGN: This is an observational multi-centre study. Four hundred and eighty-seven participants were assessed using the Caregiver Needs Assessment, Family Strain Questionnaire, Short Form 12, Spielberger State Trait Anxiety Inventory-Y, Beck Depression Inventory, Prolonged Grief Disorder Questionnaire and Coping Orientations to Problem Experiences. OUTCOMES AND RESULTS: The sample had lower scores both in Physical (M = 49.85, SD = 7.66) and Mental (M = 39.37, SD = 12.90) health and a higher level of anxiety (p < 0.001) in comparison to the Italian normative sample. More than half of the sample manifested a high level of depressive symptoms (59.5%) and 27.6% satisfied criteria for Prolonged Grief Disorder. This sample reported needs to know the disease of their beloved, high needs for information and communication, several problems in social involvement and in emotional burden. The most frequently adopted coping strategies are acceptance, turning to religion, positive reinterpretation and planning. Finally, 40.2% of caregivers report to earn a net income of less than 17 000 euros per year. CONCLUSIONS: These results showed a high burden related to providing care to patients with DOCs. This study sets the scene to plan comprehensive support strategies for caregivers in order to diminish level of burden.

Children in vegetative state and minimally conscious state: patients' condition and caregivers' burden.

Caring for children in vegetative state (VS) or minimally conscious state (MCS) challenges parents and impacts on their well-being. This study aims to evaluate caregivers' health condition, coping, anxiety and depression levels, and how these issues relate to children's disability. 35 children with VS and MCS were administered the disability rating scale (DRS) and 35 caregivers completed the Coping Orientations to Problem Experiences, Short Form-12, Beck Depression Inventory, and the Spielberger State-Trait Anxiety Inventory-Y. Children were mainly males (68.6%), hosted at domicile (77.1%), and diagnosed with VS (60%), with anoxic aetiology (45.7%). Caregivers were mainly mothers (85.7%), married (82.9%), and housewives (51.4%); 60% declared financial difficulties, and 82.9% provided full-time assistance. 57.2% reported depressive symptoms, poor mental health, and high level of state and trait anxiety. "Problem-oriented" (P < 0.001) and "emotional-oriented" (P < 0.001), were more adopted than "potentially dysfunctional" ones. DRS scores (mean = 22.0; SD = 1.9) did not significantly correlate to any psychological measure. Rehabilitative programs for children with SV and SMC should also provide interventions on surrounding systems: improving the network of psychological support and social assistance may decrease the burden of caregivers and, in turn, improve caring abilities and children quality of life.

A right to die or a right to live? Discontinuing medical treatment.

This article explores the decision in the case of W v M, S and an NHS Primary Care Trust [2011] EWHC 2443 (Fam) in which an application to withdraw feeding from a woman in a minimally conscious state was rejected by Baker J in the Court of Protection. The article places the case in the context of the development of case law concerning the withdrawal of treatment from patients lacking decision-making capacity, where death will be the inevitable consequence of the withdrawal of treatment after the decision in Airedale NHS Trust v Bland. It questions whether nearly two decades after the Bland decision there is scope for the boundaries of the decision to withdraw treatment from patients in 'futile' conditions to be reconsidered by the Supreme Court.

The experience of family caregivers caring for a patient with chronic disorders of consciousness: a qualitative content analysis.

BACKGROUND: Management of a patient with chronic disorders of consciousness is a long-term and stressful situation for family caregivers. AIMS: The aim of this study was to describe the experiences of family caregivers of patients with chronic disorders of consciousness. METHODS: Purposeful sampling was used, data were collected through semi-structured, in-depth interviews at participants' homes. Data were analysed using qualitative content analysis. FINDINGS: Results indicated that family caregivers of patients with chronic disorders of consciousness face many difficulties in providing care to vegetative state (VS) and minimally conscious state (MCS) patients; they experience it as a challenging type of care, which influences their mental health. CONCLUSION: Family caregivers are faced with many challenges because of the high burden of care, round-the-clock concern, taking care of an alive but unresponsive patient without receiving enough support. They experience mental and inner turmoil because of social isolation and dealing with contradictory feelings in their daily life.

Prevalence and associated factors of pneumonia in patients with vegetative state in Taiwan.

AIMS: The aim of this study was to investigate the prevalence rate and influencing factors of pneumonia associated with long-term tube feeding in special care units for patients with persistent vegetative states (PVS) in Taiwan. BACKGROUND: Pneumonia is a significant cause of morbidity, hospitalization and mortality in the nursing home population. Tube feeding has been found as a risk factor for the occurrence of pneumonia. METHODS: Two hundred sixty subjects were chosen from three hospital-based special care units for patients with PVS and 10 nursing facilities for persons in PVS in Taiwan. All subjects, who were diagnosed with PVS, received either financial aid for institutional care or were means-tested from The Bureau of Social Welfare of cities and counties in Taiwan. Data were collected through chart review and observations. RESULTS: The prevalence rate of pneumonia in nursing facilities for patients with PVS was 14.2%. The prevalence rate of tube-feeding in nursing facilities for PVS was 91.2%. The mean duration of tube-feeding was 73.21 SD 55.33 months. A total of 90.4% was fed with a nasogastric (NG) tube. Having a lower intake of food and fluids daily and having been institutionalized for a shorter period were three dominant factors associated with the occurrence of pneumonia. CONCLUSION: Research findings reveal that the incidence of pneumonia is higher in patients who do not receive adequate food and water. Continuing in-service training to improve caregivers' knowledge and skill in providing care to patients in PVS and monitoring their skills in feeding is needed to decrease the occurrence of pneumonia in this population. RELEVANCE TO CLINICAL PRACTICE: Staff needs to be taught to monitor laboratory data and signs and symptoms of malnutrition and hydration deficit, and also be alert to early indicators of pneumonia in patients with PVS.

Is oral feeding compatible with an unresponsive wakefulness syndrome?

OBJECTIVE: The aim of the study is to explore the possibility of oral feeding in unresponsive wakefulness syndrome/vegetative state (UWS/VS) patients. METHOD: We reviewed the clinical information of 68 UWS/VS patients (mean age 45 ± 11; range 16-79 years) searching for mention of oral feeding. UWS/VS diagnosis was made after repeated behavioural assessments using the Coma Recovery Scale-Revised. Patients also had complementary neuroimaging evaluations (positron emission tomography, functional magnetic resonance imaging and electroencephalography and diffusion tensor imaging). RESULTS: Out of the 68 UWS/VS patients, only two could resume oral feeding (3%). The first patient had oral feeding (only liquid and semi liquid) in addition to gastrostomy feeding and the second one could achieve full oral feeding (liquid and mixed solid food). Clinical assessments concluded that they fulfilled the criteria for a diagnosis of UWS/VS. Results from neuroimaging and neurophysiology were typical for the first patient with regard to the diagnosis of UWS/VS but atypical for the second patient. CONCLUSION: Oral feeding that implies a full and complex oral phase could probably be considered as a sign of consciousness. However, we actually do not know which components are necessary to consider the swallowing conscious as compared to reflex. We also discussed the importance of swallowing assessment and management in all patients with altered state of consciousness.

The experiences of pediatric nurses caring for children in a persistent vegetative state.

OBJECTIVE: The number of children surviving in a persistent vegetative state is increasing with advances in medical technology. Caring for a neurologically devastated child presents unique challenges not previously described. Our objective was to gain an understanding of the pediatric nurse's experience of caring for children in a persistent vegetative state. DESIGN: Qualitative phenomenologic study using in-depth interviews. SETTING: Monitored step-down care unit of an academic children's hospital. PARTICIPANTS: Eight registered nurses employed at a step-down care unit. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Nurses in this study described caring for children in a persistent vegetative state as a dynamic process with negative and positive aspects. Six themes emerged from this study: focusing on the parents, delivering sensorially offensive physical care, enduring conflicting emotions, suffering moral distress, finding relief and comfort, and gaining perspective. CONCLUSIONS: Our qualitative study suggests that caring for a child in a persistent vegetative state is difficult. Pediatric nurses described the experience as emotionally stressful and ethically challenging. To cope with the demands of caring for the child in a persistent vegetative state, the nurses in this study modified the traditional concept of the pediatric nurse-patient relationship.